Friday, December 30, 2016

magic

"in the end, we'll all become stories"
(margaret atwood)

if you have been reading this blog for a while, you know that at the end of every year i pick a word to focus on for the year ahead. it is a word i carry with me throughout the 365 days .

for 2016, my word was fight.

i chose that at the end of 2015 because i knew i was going to be heading into surgery and i didn't know what else was going to come. but i knew without a doubt that in 2016 i was going to have to fight.

now we know what the year held.

lung surgery.
the recovery.
more scans than i can count on my two hands.
more ivs than i care to remember.
a million needles.
1 dose of dual treatment.
a summer of fighting steroids.
swelling of my legs, face, arms.
muscle cramps.
steroid rage.
joint aches.
nightmares.
surgery to install my port.
8 doses of single treatment.
muscle cramps.
joint aches.
fatigue.
nausea.
dry mouth.
dry skin.
irritability.
lack of appetite.
taste buds totally out of whack.
good news.
bad news.

so there is no doubt that fight will stay with me, i will carry that word with me for the rest of my life. no doubt about that. there is not one day that goes by that i don't think about that word. it is the reason that i get up each day and keep going. i have to keep fighting, there is just not any other option.

so in looking ahead to 2017, i have decided that my word for the year will be "magic".

i am choosing this one for a couple of reasons.

first off, i think that we can all use as much magic as we can get. but i also want to look for more opportunities to create magic this year too --- doing special things for loved ones ---  making time for the people and activities that are the most important --- creating new memories in our home that include lots of laughter and love --- looking for opportunities to make days brighter for others.

i also know that our family needs magic in 2017. i will be continuing treatment. kim will have surgeries in february and march. my grandma has spent the last two weeks in and out of the hospital (because the fates just couldn't let our family have a noneventful holiday season), and tomorrow she will transition to a nursing home. which will be a transition for all of us as she moves to a place that we hope is the right place for her with the care that she now needs to have. so we already know that there will be tough times ahead, and i am sure that life will throw more at us because it always does. so i think that we could use some magic in 2017, and i look forward to seeing how it shows up. i believe that it will.

and i guess that i also feel like i need a little more magic myself. this year has been one hell of a year for me. i am really tired. i am hoping that 2017 brings me some medical magic. i don't want to jinx myself with any predictions of what could come, or what i would like to have happen. but i really, really hope that this year brings some magic and good news.

i think i deserve some magic.

i think that we all do.

i hope that however you ring in 2017, whether quietly or loudly, the upcoming year brings you what you are wishing for.  and i hope that it brings you good health, laughter, some new adventures, a chance to give love and be loved, and gives you many opportunities to thank your lucky stars for each day you get to wake up and start a new day.

i thank you for reading my words through this year as my story continues.

i thank you for all of the love, prayers, mojo, and kindness you have given me and my family this year.

there are not enough words to say how much it has meant to us.

happy, happy new year to you and yours.

may 2017 be a good year for all of us.

any year i fight, you fight.

onward we go.

xoxo

+++ if you are thinking about a word for 2017, you can go here to read about ali edwards's "one little word" class, and to her blog to read about her word "connect" for 2017
+++ my friend liz has her amazing talismans again this year so you can carry or wear your word throughout the year, check out her shop - i will be carrying a heart talisman with "magic" on it throughout this year. liz also just wrote about her 2016 word "gentle" on her blog
+++ elise blaha cripe has her 2017 goal tracker available, i am printing mine this weekend. i already know what the goal will be - but i might end up having more than one;)
+++ another blogger i follow has chosen peace for her word for 2017 (and her shop is great and i got many gifts from her shop this year for the holidays).











Thursday, December 29, 2016

last one of the year


today was my last scan of 2016.

things were pretty standard until they injected the contrast in my port during the scan.

i wrote last time about how the contrast moves much more quickly through my system with the port than it does when it comes through the iv in my arm. i felt some nausea last time (which was my first time getting the injection through my port) but nothing like it felt like today.

as soon as the contrast starting moving through my body (it feels warm so i can literally feel it moving inside of my body) it was like a massive tsunami of nausea hit me. i felt like i was immediately going to throw up all over the inside of the machine and myself. in my head i was thinking of yelling at the tech "pull me out! pull me out! pull me out!" because i was inside the machine. but i knew that was the exact moment they were going to take the scan. so somehow i stopped myself from vomiting while holding my breath. as soon as i rolled out of the machine i started taking huge breaths trying to stop myself from getting sick.

i made it to the recovery area and for about 30 minutes i just sat on the couch, hunched over on my side, wrapped in a blanket, trying to breathe, and i did not move a muscle. i could not even talk i was so nauseas. i was finally able to get some apple chips down and a string cheese and took one of my nausea pills that usually knocks me out. but because i was behind the nausea, it didn't immediately help. i was able to get into the car to head home. i walked in from the car and went straight to bed. i couldn't even take the 10 extra steps to tell malena hi because i had to lay down as soon as possible. i was in bed for most of the afternoon.

the nausea got a tiny bit better through the rest of the day, but even as i write this, i am nauseas.

we get results on the 4th and those will determine next steps.

so we have a long wait this time around.

thanks for all of the continued good vibes and love.

anywhere i fight, you fight. xo

Sunday, December 18, 2016

long time, no write

it has been awhile since i have been on here.

i had my 8th treatment last week, my bloodwork was good and so things were a go.

i have scans coming up next week, and then we will get the results the first week of january.

if the tumors are the same or have shrunk, we will stay the course on the current treatment.

if the tumors have not changed or have grown, we are going to double down on treatment and we will add the second drug back in again.

i will have infusion the same day as i get results, and we have it scheduled so that i can do an infusion with both drugs if needed that day.

as you can likely imagine, i have about a million emotions about scans coming up and what the results will be.

in the meantime, tomorrow i head back to seattle cancer care alliance with kim and my brother. tomorrow she meets doctors from scca and on tuesday she meets with surgeons at the university of washington.

so please send your good thoughts and prayers and mojo to kim tomorrow and tuesday (and everyday really).

we so appreciate it.

i hope that your decembers are treating you well so far. xoxo






Sunday, December 4, 2016

beth + kim + those damn joints

thanks for all of the love and good vibes for beth and kim last week.

beth got her results on friday, and while they were not the all clear we wanted, they weren't the worst news she could have got either.

i will let her tell you in her own words because it is her story.

well I still have spots and they are still growing.  Albeit slowly.  So the fact that they are growIng my radiation oncologist wants me to come back for another scan in 3 months.  He knew I wasn't going to like that news.  I did cry.  
We still don't know what the spots are.  They are still half the size of what they would need to biopsy which is 1 cm.  
He said they aren't acting likely a typical cancer because they are growing so slow.  But it doesn't mean they aren't cancer.   
I did also ask about the construction at my place and since there is mold there If it could be fungal.  He said it was plausible and seemed intrigued with all the construction at my place.   He is going to ask some pulmonary specialists and let me know.  

I didnt think the lung spots would be gone but assumed I would stick with a 6 month scan.  So I am not happy but we still don't know what it is. I promised him I wouldn't live the next 3 months like it's cancer doomsday.   Because we just can't.  
In some ways I never want the spots to be big enough to biopsy.   But there is a chance I have to have scans longer than 5 years and may live for a long time wondering what these spots are with no definitive answer.

all labs looked good which is a good sign.  
We are on our way to Vancouver and I will try to enjoy myself and live the next 3 months like I planned on anyways.   (I am not going to lie that I am very disappointed however)

On a good note my very great repairman came over last night and all is fine with the oven.   

I couldn't do this without you.  Thank you all for your ongoing love, support and prayers.

so please keep the good mojo going her way so that those spots stay right where they are over the next three months, or even better, shrink!

kim had her MRI on friday, and she meets with the surgeon tomorrow to talk about the results and next steps. so please send love, prayers, and all of your good mojo to her tomorrow morning as she learns more about what comes next and when.

as was to probably be expected, my joint aches have got worse since the latest infusion on monday. i was sore on saturday but was doing fine. then by saturday night, my joints hurt so bad that i was in tears. i took some advil to try and get some sleep during the night. my kind husband woke me up at 5am so that i could take an advil and get ahead of the pain for the day. i had a sauna appointment and a fun afternoon planned with friends. i had cancelled both of those plans by 8am because i was in so much pain. i had to have barrett come up and help me get out of bed because i couldn't put any weight on my arms to leverage myself up.

so it has been a rough 24 hours. but the advil has helped a small bit to numb the pain.

i hate having to cancel plans. it feels like throwing up the white flag. but tomorrow is a new day, and hopefully there won't be a need for me to throw up the flag again.

so we will see how tomorrow goes.

one hour, one day at a time. that is what i keep reminding myself.

thanks for all of the love that you are sending my way as well. as always, i really appreciate it.

happy monday.

here we go again. xo

+++ for all the local peeps, there is a great holiday pop up shop at the historic shell station on front street in issaquah, more info is here. and the christmas cabin is open at timber creek in redmond and more info is here. you are welcome.

Monday, November 28, 2016

7 down + kim + beth


7 is done.

bloodwork was good today (thank you liver and kidneys) and so we were a go for the infusion.

we talked about the side effects and how some remain the same (absolutely dry mouth) and some continue to increase (fatigue, joint aches). the joint aches have definitely kicked up a notch or two in the last couple of weeks. it takes me a bit longer to get moving after i have been sitting and sleeping has started to be an issue. i wake up multiple times during the night because my hips/shoulders/wrists hurt. so i am starting to have more interrupted sleep which doesn't help the fatigue. a vicious little circle these drugs cause.

this morning was the first time that i couldn't do something that i wanted to do. i couldn't lift a tea mug to put it in the microwave. i filled the cup up with water, walked over to heat it up like i do every morning, and i could not lift the cup up into the microwave because my wrist was hurting so bad. that was a tough moment, i am not going to pretend it wasn't. but luckily my left wrist wasn't as bad and so i got the mission accomplished. so we will see what this night and tomorrow morning brings. my oncologist said that if the pain gets too bad (as it can for patients on this drug) then we can go back on prednisone for a bit to help alleviate the issue. i can tell you right now that i will do everything i can to not go back on the steroids. but as i am always reminded, all of these things aren't up to me and the cancer fates like to sometimes have their say. but, i will keep doing everything i can to avoid that, and the cards will play out as they will just like they always do.

in better news, i got my biopsy results today and the lump on my leg (which is still there) is benign. whew. so thankful for that. my derm will explain to me on friday more about the mass and what it is, have i said how much i love my derm? that man is the best. i pretty much feel like everyone should drive to bellevue to have him be their derm. he is just that good.

i am so damn thankful for my doctors, i do not know (and don't even want to think about) what i would do without them. they can never, ever retire. that i know for sure.

thanks for all of the good thoughts and love for kim today, we really appreciated it. her appointment with her surgeon went well and she is scheduled for an MRI on friday. the results of that will help to inform exactly what may need to happen during surgery. she will meet with the surgeon next week to talk more about surgery and the timing. so keep sending the mojo and prayers.

i also need to ask for your mojo and prayers for my friend beth, this week is her 6 month check up for scans. she has scans on wednesday and she gets the results on friday. now i know, and you know, that these results are going to be totally clean. but just because i like extra insurance (kind of like the kind i pay for every time i book a trip these days), i am calling all of you reinforcements in for your mojo goodness so we can make sure that cancer knows to get the hell out of seattle and not mess with beth.

thank you as always for all of the support for me, and for these fighters that i love. the ones like beth that you have followed for years now, and the ones whose stories you are just beginning to know like kim.

have a good tuesday peeps, make it a really good one. xo





Sunday, November 27, 2016

for kim



this is my sister-in-law kim.

she has been with my brother since i was a kid, so basically i don't remember what it was like to not have her in our family - and so i think of her as a sister and ditched that "in-law" part a long time ago.

on wednesday kim was diagnosed with breast cancer.

and again, our world stopped turning.

as soon as i heard her voice on the phone, i knew something was very, very wrong.

and through the tears were the details of what we know and what we don't know at this point.

beyond the details we don't yet know about all of the next steps, here are some others things i don't know.

i don't know why the fates chose her.

i don't know why our family seems to have the hits keep coming one after another.

i don't know why the fates think that my parents should have two of their kids fighting cancer at the same time.

i don't know why they feel that she should have to take on this fight.

i don't know why my brother and my niece and nephew (and all of her loved ones) should have to watch her take on this fight.

i don't know why someone else i love has to get this news. i am supposed to be taking the cancer card for my team, and each time someone else i love gets this news i just get more and more angry. and sad. because i don't want anyone i love to go through this fight, and i can't seem to protect everyone i love regardless of how damn hard i fight.

i don't know why the fates are so damn cruel.

but here is what i do now.

i know that kim is stronger than she probably feels like she is right now.

i know that she will dig as deep as she needs to in order to fight this.

i know that she is going to be surrounded by more love than she can imagine and she will have love by her side every step of the way.

i know that my family will circle in and move forward like we always do, we just need time to process the shock and get our legs under us.

i know she will kick cancer's ass, because her and i have already made a pact, we both fight for as long as it takes.

on monday at 12 she meets with the surgeon. we are so thankful that they are able to get her in to to see the surgeon so quickly.

please send your love, vibes, mojo, prayers and anything else you've got to kim.

while she is in her appointment, i will be in my infusion appointment if my bloodwork comes back ok.

so tomorrow we both fight at the same time, although frankly, i think that we will both be fighting at the same time from this point on regardless of whether we are in appointments.

i still have not heard back on my lump biopsy on my leg, hoping to hear monday or tuesday.

thanks for all of the love and good thoughts.

we need them.

anywhere we fight, you fight. xo



Wednesday, November 16, 2016

38


this guy turns 38 day on thursday.

i went back tonight and read through this post.

i wrote those words over 5 years ago.

so much has happened and changed between now and then.

but one thing remains the same.

we are still sticking this life out together, even though for some reason we seem to have had to take more than our fair share of blows through these years.

but when we get knocked down, we always find our way back on our feet.

and we always keep going.

so on this day, i am super thankful that we get to celebrate his 38th birthday together with our girl.

another milestone together.

i love that.

and...i kind of love him...even though he is pretty much 40 years old;)



Monday, November 14, 2016

long day


today was a long one.

i forgot to put on my numbing cream this morning and so getting the injection of litocaine was a little more painful that normal. but not too bad. but just enough discomfort that i won't forget next time.

my bloodwork was looking good -- all my organ functions are still in the normal range. super happy about that. so treatment was a go.

we talked about my side effects and i will stay on the diuretics as they seem to be helping with the swelling. we talked about my joint aches increasing and developing arthritis which can be a side effect of this treatment. which i knew when we started. but hopefully that isn't what is starting to happen and my joint aches don't get to the point that i am not able to do normal things. right now it is just uncomfortable due to my shoulders/hips/legs being so achy, but i can function - i went running yesterday so i can do it. it just makes everything a little bit harder. but i am used to harder.

regarding my leg, the lump seems to be a bit bigger so my oncologist wants me to see my dermatologist. i will see him on friday. i would guess that we will do a biopsy on friday, and i would guess that it will be a large one. since is on my lower leg, i hope that the amount of stitches won't prevent me from running. but like with everything, we shall see.

my infusion went normally and was about the typical 2 hour process.

after the infusion, i changed from my sweats and hoodie to work clothes. i had a work meeting that couldn't be scheduled on another day and i couldn't miss it. so barrett and i went and got some lunch and then i headed to the meeting that i had to lead. it was hard to concentrate and i was so tired, but my friend who was in the meeting assured me that no one would have had a clue that i had just come from cancer treatment (and i choose to believe she is telling me the truth;)).

after that we picked up malena and headed home. i kept an appointment for a hot sauna and we had a low key night.

i had to get ready for my meeting so i didn't get to sleep during the infusion. so today has been a really long day and i am so tired and my body hurts.

it was a day full of changing roles. being a mom and getting her lunch packed and getting her to school. being a cancer patient and getting an iv in my port, getting poked and prodded. hearing the hum of the infusion machine for an hour. talking about side effects, biopsies, liver counts, potassium counts, heart rates, fatigue. being a work professional and leading a meeting with my client. being a friend while on the phone with one of my best girls. then back to being a mom and wrapping up our day with homework and the routines of our weeks.

so off to bed i go. 

i hope that your mondays were good ones.

i got another infusion and another shot at kicking the tumors where it hurts.

so that makes for a good day for me.

my girl turns 8 this week, and my guy turns 38.

all the motivation i need to consider today a good day.

thanks for all the love and support.

anywhere i fight, you fight.

and there is still a hell of a lot of fighting to be done. xo

 

Sunday, November 13, 2016

6

well here we go.

another treatment day.

#6.

we will also get confirmation on what we will do, if anything, about my leg. based on the ultrasound results, my oncologist wanted to wait and see. i will talk with him tomorrow about whether it makes sense to have my derm take a look and potentially biopsy that spot. since the ultrasound indicated it wasn't a mass (and therefore likely not a tumor) that is a relief. but i don't like feeling the lump in my leg so i think that i would just prefer to get it out. but we will see what he says tomorrow and go from there.

the side effects continue on. this week my joints are really sore so not sure if that is something that now will be ongoing as a side effect or just a related effect to this cold that i can't seem to kick. the swelling, dry mouth, muscle spasms continue. the fatigue continues to increase but that is to be expected as i take more doses.

i hope that you all had good weekends. ours was good. saw "trolls" and loved it. had camp outs. sat in our hot tub. i had a sauna appointment. read my current book. tickle fights. shopping with malena. lunch at one of our favorite spots. swim lessons. a friend's birthday party. celebrating a friends birthday at one of our favorite breakfast spots. malena and i trying out a new s'mores recipe we made up and cracking ourselves up while we did it. hugs and some laughter. it was a good one.

happy monday all, i will let you know how the day goes.

anywhere i fight, you fight.

#6 we are coming for you. xo


Thursday, November 3, 2016

ultrasound

this is going to be a short one because my bed is screaming for me.

the ultrasound tech told me that he didn't see any masses or blood clots in my leg. he sent the results to my oncologist who will call me with the results.

but it was good to know that the tech didn't see anything.

his name is tom and he has been my ultrasound tech through all these years.

he is a kind man and i really appreciated him giving me his read on what he was seeing.

so i will definitely sleep a little bit better tonight.

that is for sure.

thanks for all of the good thoughts and love this week, as always.

it means the world to us.

happy friday peeps. the weekend is here.

finally.

enjoy it.

Tuesday, November 1, 2016

next steps

since yesterday was my mom's birthday and it was halloween, i didn't have time to get back on the computer last night so i thought i would give a little more info on how yesterday went.

when we got to scca and i went to talk to my scheduler about timing on a counseling appointment i had, she let me know that my counselor is no longer working at scca.

that was a total blow that i didn't see coming.

at all.

i had been going to my counselor for probably the last year. she was part of my team, and i really appreciated that i was able to talk with her on a regular basis. for me, having someone to talk to outside of family and friends is important. it is part of the lifeline for me in finding my way through this fight as a mom/wife/daughter/daughter -in-law/sister/aunt/friend/cousin/boss/peer...the list goes on and on. because while i am all of those roles, i am also the cancer patient. i am the one going through the poking and the proding, the muscle aches, the fatigue, the pain, the exhaustion...and that is just the physical stuff, which in many ways doesn't even compare to all of the emotional stuff. so she was a neutral party and didn't have stakes in how i felt or what i would say. i could just talk and cry and say whatever i felt at that particular moment, and she took it all in. and gave me encouragement along the way.

so to have no wrap up, or heads-up that it was coming, is hard.

i lost one of my team members and that is really tough.

i could see the counselor that is taking her patients, but to be honest, i feel like i need some time to grieve. it is a loss for me. and i really don't want to start over with someone new. i don't want to walk them through all of the background. i don't want them to have to get to know me and my story. i just don't have the energy to do that right now.

maybe with some time, i will feel like diving back in again.

following that news, we got called back for the results.

as i wrote in the update yesterday, the tumors have not changed in size. which honestly was  a blow. i had wanted to see some progress from the last two months of treatment, i wanted to know that it was working. but i was thankful that they tumors had not grown  and that there were no new tumors (worst case scenario).

so we talked and weighed the options. i could start the second drug now.  that comes with the risk that my liver goes into failure again, i have to stop all treatment, and go back on steroids.

sometimes the drug i am on has a delayed effect, meaning it could be working but it will take longer for the progress to kick in. it could be that this drug i am on is not going to help me. we really don't know which of those two scenarios it will be.

so it was really my decision to make, but i also had to consider the holidays are coming up. if i go on the second drug, not only could it make my organs not cooperate, but it could also introduce other side effects than the ones i currently am dealing with. and as my oncologist always says, quality of life is just as important as the medical statistics.

and i really want to be able to enjoy the holidays with my family.

so, we decided to go four more rounds with the current treatment and do scans again at the end of december. if the tumors have not decreased in size, i will start the second drug at the beginning of january and will take on whatever comes from that.

but if all keeps going as it is now, i will have a good holiday season. the current list of side effects aren't fun, but they won't prevent me from having fun. i couldn't know for sure that i could say the same for the second drug.

so in the end, that was the decision that we made. definitely not an easy one. of course i wonder if this drug is working, and if it isn't, whether i would be better off to start that second drug now so it can start working.

but there are never easy answers. there are never answers that we know will be the right answers.

i can only go with my gut.

and let's hope it is right.

oh, and the lump. saturday night i found a lump in the lower half of my left leg. my oncologist felt it yesterday and decided we need to do an ultrasound. it could be something going on with a blood vessel, we hope it isn't a tumor. i will do the ultrasound on thursday afternoon and my oncologist will call me with the results. so one more thing to worry about, and i will say that being able to feel it is super unnerving, whatever it might be. so, i am hoping for good news that is not melanoma and we can get it taken care of. fingers (and obviously toes) are crossed.

well, i am so tired it is unbelievable, and my brother is going to be all over me tomorrow for this post going out after 10pm (laura h -- i saw your note in the card you sent mom about how it makes you laugh that stevie is my bedtime police;)), so i am going to hit the hay.

goodnight peeps.

happy wednesday.

hope it is a great one for you.









Monday, October 31, 2016

update

The results are in ---- the tumors have not grown or shrunk. There are no new tumors. I will go 4 more rounds on current treatment, then scans at end of December. If no change in tumors, will start treatment with a second drug added in at the beginning of January. I found a lump on my leg on Saturday and we will do an ultrasound of that this week. Keep sending the mojo;) xo

Sunday, October 30, 2016

weekend + here we go

our weekend was a good one.

catching up on 'the voice' and 'project runway' - love them both. reading. sleeping in. sauna appointment. green teas. finding the perfect sweatshirt at target. time in the hot tub. camp out nights. baking with malena. getting in a run/walk on both days. today i ran farther than i did yesterday, and yesterday i ran farther than i did last weekend. it was like my legs started to kick in and say "oh yeah, i think that we remember how to do this. just keep giving us some time to practice." having family up to celebrate my mom's birthday. lots of laughter with my family. getting to watch mom blow out the candles on another healthy year for her.
pumpkin carving with her and my dad. looking at our four pumpkins all lit up and loving them. watching the world series. eating good food. watching a powerpoint (she knows computers better than her mom) that malena made that was all about things that she loves.

so many good things.

so tomorrow (monday) morning we go in at 9:30 to get the scan results.

since tomorrow is my mom's birthday i can only think that will bring me good luck. it has to, right? right.

so we will know how these five rounds of treatment have gone. are the tumors larger? are the tumors smaller? are the tumors the same size? if they are smaller, i think that my oncologist will say that we should stay the course and stay on the same treatment cycle of the same drug every two weeks. if the tumors have grown or are the same size, i think that he will say that we will introduce in the second drug to the treatment cycle starting with my next round.

only time will tell. 12 hours from right now we will be sitting in the office waiting to get the results.

12 long hours.

but in between that time, midnight will come and my mom will turn one year older. and for that i am super thankful, regardless of what happens tomorrow. it means that we have got to have her with us for another year, and have so much more to look forward to in the year to come (and beyond). so for that, i am thankful to october 31st.

tomorrow will also bring the chance to celebrate halloween with malena, go to her party at school, and walk our tiger around for trick or treating tomorrow night. those are all really good things to look forward to tomorrow.

thanks for all of the good thoughts and vibes. i will write an update here tomorrow as soon as i can after my appointment.

anywhere i fight, you fight. xo

Friday, October 28, 2016

the day


long day.

when we went to the store this morning to get my cinnamon bears (superstitious tradition on scan day) the store was out.

i then went to three more stores.

no cinnamon bears.

then the tears started to fall because when my routines get off on scan days it throws me way off my game. luckily my kind husband let me come home to get ready to head to seattle and he then went on a bear mission and was successful. i knew that i kept him around for a reason;)

i got called back for bloodwork as soon as i got there. i got one of my favorite nurses this time and i really like him. so i thought that was a good sign for the day. i got my litocaine shot in my chest to numb the area for them to put the iv into my port. after they took all of the needed blood, they flushed my port (which is when they inject saline into it to clean it out) and i knew it was working because i could taste the saline in my mouth like always.

i drank everything i needed to and then headed back for the scan.

i did not get the room with windows. i got the room with those damn ceiling tiles. that was not a good sign.

this was my first scan with my port. so when they injected the contrast into my port it moved through my body so much faster than it did when the iv was in my arm. i had to take a ton of deep breaths because the nausea came on so much faster this time - makes sense since the port is connected to my main bloodstream.

we waited per usual to make sure that i didn't have a reaction and then the nurse flushed my port line again. 

we grabbed some lunch. by that time it was about 11:3o and since i had not been able to eat since last night i was really hungry.

we then checked in for my infusion. after my meds arrived and my nurse got the infusion going, we both took a nap. i was out like a light. i have not got a lot of sleep this week and was so tired at that point i could barely keep my eyes open.

i woke up to the beeping of the machine indicating that the infusion of the meds were over. then the nurse connects some saline and other liquids up to flush my port again which takes about another 10 minutes. the infusion itself takes an hour once it is connected to my port and started.

so we left around 2 and headed to a favorite bakery to get a little treat for the drive home.

we got home and i had to check in on work quick, and then i crashed again for a couple of hours.

i now feel really tired and the usual feeling of bloated and not feeling well. my body was pumped with so many liquids today that i just feel super sluggish. should feel a little better by the morning hopefully.

thanks for all of the good thoughts and love coming our way. we really appreciate it.

have a good weekend peeps, make it a good one. we plan to.

xo



scans + round 5

today will be a long day.

i check in this morning to get bloodwork done through my port.

then i go through the scan process, you all know how much i love that. the contrast that makes me sick. the ceiling tiles, hoping i get the room with the windows again.

after i am through with the scans, i check in for my infusion assuming my bloodwork is ok.

i was supposed to have my next infusion on monday after we get scan results. but the timing of the infusion was too close to the time i am supposed to be a halloween party at malena's school. and there was no way i was going to risk not making it to her party on time due to infusions. so i worked with my scheduler to see if we could get it in today. i felt like i was going to already feel like total crap coming out of scans, so why not just add an infusion to it  and make it one long day.

i am still waiting for my oncologist to give me the final approval on the switch to today, but i would surprised if he was not ok with the plan for some reason. i will take it as it comes.

monday morning we will get results from the scans. these will be big. will we see whether the tumors have shrunk due to the treatment? will they be the same size? will they have grown? ugh. so many different possibilities, i am sure you know which one i am hoping for.

i will let you know how today goes.

thanks for all of the good thoughts and mojo you continue to send our way.

anywhere i fight, you fight.

xo

Monday, October 24, 2016

make it one more

"take a shower. wash off the day. drink a glass of water. make the room dark.
lie down and close your eyes. notice the silence. notice your heart. still beating. still fighting.
you made it, another day and you can make it one more.
you're doing just fine."
(charlotte eriksson)


for a monday, lots to be thankful for:

+++ for my friend kris's mom judy (who i have wrote about here before) making it successfully through a 9.5 hour surgery today which was a follow up procedure due to some complications from previous surgeries related to cancer that she has successfully fought. she is a tough cookie so i know that she will make it through this recovery as well as she has the previous times she had to rebound from surgery. but please send your good vibes and prayers to vancouver and to judy and her family as she moves forward. you can do this judy, that i know for sure.

+++ for laughter with malena on our way to school today.

+++ for green tea.

+++ for my sauna appointment that always makes me feel a bit better.

+++ for the start of a new book, and liking the ones that i have recently read which included a man called ove (one of my favorite books i have read in a long time) and love warrior (so good and so happy i bought this one so i don't have to take it back to the library) and sweetbitter (couldn't put it down towards the end).

+++ talking to my mom

+++ nice text messages on my phone and emails in my inbox

+++ finding the perfect addition to our home

+++ the woman at the local mail store telling me that they wouldn't charge me more than the post office would to mail my package to my nephew because they don't take profits on packages going to military service members

+++ malena's homework officially starting for 2nd grade and her being super excited to do reading, spelling, and math problems. reminded me of how much i loved studying for spelling tests when i was a kid. the apple doesn't fall far from the tree.

+++ avocado toast for breakfast

it was a good one. hello tuesday.

Sunday, October 23, 2016

waving the white flag


this week i felt a little bit rougher than previous weeks.

could just be the treatments starting to accumulate. the meds hopefully working their magic. my immune system in overdrive. my body being pretty wiped out.

on thursday i was supposed to go down to portland for a concert. but i knew by wednesday that i wasn't going to be able to do it. i just wasn't feeling well enough to be able to go. that was a really hard decision as it felt like i was waving the white flag a bit and surrendering  (which i do not like to do). so that was hard but it was the right decision to make. i knew that when i made it, but it didn't make it any easier. i was angry at the tumors. for having to do treatment. for not being able to live my life on my terms. in truth, i am still kind of pissed about it. but i am reminding myself that waving the white flag on a certain day doesn't mean that i am keeping it in the air. just during the times when i have to.

this week the side effects all seemed to remain the same, just more tired this week which is understandable as time goes on and the fatigue increases.

the other daily part of all of this that is pretty frustrating is that when i am driving the car, the seatbelt comes right across the part of my chest where the port is. and it hurts. so i drive with my seatbelt down a little bit on my arm. but it is frustrating and annoying, and a reminder every time i get into my car that i have the port in my chest. these meds had better be working their magic.

this weekend was low key, which is how i like it these days. the weather was beautiful so i got out both days for good walks, and a little bit of running. malena and i went today and she was a good walking partner, and even wanted to jog for some parts of it. i can definitely tell that i haven't been running for months, i am pretty sore from the miles i put in this weekend. so training for the 5k in december is going to be a total and complete grind. but that is ok, i have done it before, i can do it again. i just have to put in the work.

i hope that your weekends were good too. i don't know about you but i am kind of hoping that monday takes its own sweet time in getting here.

have a good one (err...as good as mondays can be).


Monday, October 17, 2016

round 4


round 4 is in the books.

my liver levels are holding steady.

the only thing that came up today was that my potassium level was low. i wasn't surprised by that one as i had some wicked charlie horses in the middle of the night a couple of times last week. so i have been eating some bananas which have helped, amazing how those bananas can quickly help with muscle spasms.

the swelling is a little better due to the meds i started two weeks ago. hopefully it will continue to get better as more time goes by. i am on the lowest dose possible so that i don't have other side effects start to increase, so i guess i can tolerate the swelling in order to not have some of those side effects added into the current mix of fun.

my mouth is still like the sahara desert but i have found some lemon drops that help to break up the monotony of tea and water on a non-stop basis and get my saliva glands working for a few minutes. i seriously don't know how camels do it. but i feel like i could totally hang out with them at this point. dry mouth, moving slow, yep -- pretty much belong with them these days.

i haven't lost too much hair recently which is good news. i got my hair cut on friday and my hair angel jeremy and i were high-fiving that i still had hair to cut. oh the little victories, you have to celebrate them along the way.

since my legs hurt so bad, i haven't been getting out to do much any walking/running. actually i haven't done too much exercise at all since surgery in february because by the time i recovered from that we were into the treatment starting, and then the steroid phase hit and there went my summer.

so you know me. my legs hurt. they are swollen. it hurts to do much at all.

so of course i needed a good goal.

i signed up for a 5k run in december.

because if my legs are going to hurt, they might as well hurt while i am running with them.

right? right.

so last weekend i got my first walk in for a few miles, and plan to make it happen a couple of times this week too to work back up to running. i got zero walking in last weekend since stormapalooza was in effect here and i am not going to run in the rain and chance getting sick. my immune system needs to fight the tumors, not a cold. so when the weather cooperates i am all about it.

i read this article by tom brokaw last week and thought it was so well written (which was not a surprise because look who it was written by). i could relate to a lot of what tom talked about in the article. maybe like every word. and of course you know that i loved the last line.

like tom says, cancer hasn't been invited to a lot of things around here lately either. pumpkin patch trip. reading books. tickle fights. camp out nights. a lot of laughter. trips to the library. making some crafts. watching project runway. watching the voice and cheering on the singers (btw, is anyone else besides me so excited about the cartoon movie "sing" that comes out at christmas? can't wait). teaching art to malena's class. having a pumpkin carving party with our fun neighbors (and of course we had some photo props. you know that was a given).



there is a lot more to come that cancer won't be invited to around here.

and that is just the way i like it.

happy tuesday peeps.

thanks for all the continued love and support

four down. who knows how many more to go.

today the nurse asked me if i am ready to go back on the second drug if i have to.

i told her that i am scared because i am worried my liver will not take it and i will have to go back on steroids (which i really, really, really, really do not want to have to do again). but i told her that if that is what i have to do, then that is what i have to do. there are just no other options but to keep going.

but you all already knew that, didn't you?

anywhere i fight, you fight.

onward we go.






Tuesday, October 4, 2016

round three


round 3 is in the books.

my bloodwork was good yesterday and all of my organs are cooperating. which is of course really good news.

so we were a go for the infusion.

we are going to do scans again on 10/28 and will see what is going on with the tumors. if they are shrinking, we may stay the course. if they have stayed the same or increased, we may start in with the second drug again. we will cross that bridge when we get the results on the 31st.

the side effects continue. a lot of swelling and pain in both of my legs and feet. i got some meds prescribed yesterday to hopefully start to decrease that, i am really hoping that they work. i am also hoping that they don't have side effects of their own. i can only hope.

my saliva glands have for some reason stopped working so my mouth is pretty much like a desert, even when i am eating. we have no idea why that is happening but it is a drag. so i am drinking a ton of water and tea everyday and have started using lemon drops to try to help a bit.

i am still really, really tired which is why i haven't wrote much (or at all) in this space in the last two weeks. i have been going to bed earlier than normal (my brother will love that) and so i have not had the energy to write or stay up any later than i have to.

but i do miss this space so I hope to get back to it more often.

i hope that your days have all been good, and thanks for all of the mojo and good vibes -- my liver and kidneys and i all thank you):

happy wednesday, we are half way there peeps.

ps) rozanne - great minds think alike, saw your comment just as i started to write this;) xo



Monday, September 19, 2016

round 2 in the books


round 2 is in the books.

though my bloodwork appointment was at 8am, they didn't call me back until 9am so the day was off to a long wait.

when they prepped the port for the needle and bloodwork, my chest was still really sore even with the numbing cream. so they gave me a shot of litocaine first and that helped. it was a very odd feeling to have the port needle go through my chest, hard to describe, but unlike anything i have felt before. and it wasn't super fun, i can tell you that. but it should get easier once my port area heals up some more and isn't so sore.

my oncologist is not currently worried about all of the swelling since my kidney and liver are looking good. if i start to have some other side effects (i will spare you), then we might be worried my thyroid is having issues and that would likely show up in my bloodwork anyways. so he gave me the green light for treatment.

we will likely go through a couple more rounds of treatment (if my liver cooperates) and then do scans. if we are seeing that the tumors are shrinking, then we may stay the current course. if the tumors are the same, then we may introduce the second drug back in (at a lower dose) and see if my body can take it.

the infusion went pretty much as planned for the day. i took this picture once i was hooked up and the meds were pumping through my port.

after treatment, we grabbed some food and then we came and i crashed for a couple of hours.

long day.

but a good one because round 2 is in the books.

and hopefully those tumors are getting worked over as i type this.

thanks for all of the love, prayers and support.

we couldn't do this without our village.

that much i know for sure.

goodnight all, and have a good tuesday.


Sunday, September 18, 2016

round 2 (hopefully)

round 2 is scheduled for tomorrow.

we will see how it goes.

8am bloodwork.

9:00 oncologist appt.

9:30 counseling.

10:30 infusion (if bloodwork cooperates).

i am really hoping that my liver is going to cooperate with me tomorrow and i will be able to get another dose.

but we shall see. as i have learned over this summer, my liver has a mind of its own (and the fact i haven't had one taste of a cold cider since may in order to keep my liver as healthy as possible doesn't seem to make it behave either. which is pretty frustrating at times all the time).

in the meantime, the side effects seem to be consistent now with swollen ankles/feet, pretty constant muscle aches throughout my legs, some other swelling that seems to be sticking around, and this last week brought some waves of nausea during some of the days. i might be imagining it, but it also seems like a lot of my hair has fallen out in the last week, so we will see if this is an unusual week or if that is a sign of things to come (or, to lose).

the area around my port and the scars is still really tender and hurts. so i am still loving tylenol and nursing my left side a bit. you should see me in the morning trying to get up and moving, between my sore left side and my legs, it is quite a production.

and oh yeah, the other side effect, tiredness.

this weekend i pretty much just listened to my body and rested as much as possible. slept in. took naps. got in a lot of sleep. i think my body was telling me that it really needed some time to just rest. so i listened. which is hard for because if you know me well, i am not usually sitting still and i like crossing things off my to do list like no one's business.

but, i have also realized over these last months that i need to really give myself some grace. if things don't get checked off the list, that is ok. they will be there tomorrow (and the next day, and the next day). and that is ok (even if it drives me bonkers which is where the grace is trying to come in).

this weekend i was able to go out and cheer on my awesome friend jen who was walking 60 miles over three days to raise funds for breast cancer research in memory of her beloved aunt and many others. for about three hours, i watched a majority of the 600 walkers walk by and cheered each and every one of them on. every one of those people was walking because their life has been touched by cancer, whether it was the individual directly or someone they loved. i did that walk twice and i know how hard it is. i also know how emotional it is. but there is nothing about cancer that isn't emotional. there was no place i would have rather been on saturday, regardless of the fact that it was so windy and cold outside. i was just cheering in that weather, they were walking 20 miles in it. i had zero room to complain. is it hard to be at events like that for me? absolutely. will i choose to do it again and again? absolutely. because when your friends show up to get in the fight, so do you.

jen has done this walk numerous times and has raised over $25,000 for breast cancer research. one word: hero.



earlier this week i saw this kal barteski print and it says it better than i could. so of course i bought myself one. and i know exactly where i am going to put it so that i can see it every morning. "you will want to give up. don't." i am not planning on it.

monday is my brother's birthday (you know, the one who stalks my bedtimes according to the times i post blogs;)), so i am pretty sure that means that all will go well tomorrow because he is going to bring me good mojo.

so happy birthday to my awesome brother, and to the rest of you, happy monday - i really hope it is a good one for you.

anywhere i fight, you fight.

round 2, we are coming for you (insert fist emoji here).



Monday, September 12, 2016

zzzzzzzzz

i know that i have said this before.

but man, i have been so tired since friday.

i spent a lot of the weekend sleeping because i just could not stay awake. pretty sure that it was my body's way of saying "whether you like it or not, you are going to rest. right now."

in terms of the side effects, from the port, i am still pretty sore and am taking tylenol on a regular basis.

the area around the incisions and port has been really itchy, and though i barely touch the area, it is so odd to feel that port inside my body. i am definitely not used to that, and may never be. that has been a harder adjustment for me than the scars and the healing.

i woke up sunday with my eyes almost swollen shut, i think that is from the treatment. that got better as the day went on. but i have quite a bit of swelling in my face and my ankles and feet still. it is crazy how much my ankles and feet hurt from the swelling.

so the list of aches/pains go on and i will admit, it is all pretty frustrating at this point. i think that i would trade nausea for all of these other side effects. yep, they are that frustrating. they wear me down much more physically and emotionally than the nausea.

my next treatment will be next monday the 19th.

in the meantime, while dealing with all of the above, there has of course been my fair share of joy.

watching the dream team scientists on the stand up to cancer show on friday night and feeling encouraged by the stories of people dedicating their lives to finding cures. getting some laughs in with my parents. a gluten free scone (thanks hooch for the recommendation). time with barrett and malena. neighborhood movie night while watching ice age with friends. celebrating the upcoming arrival of my good friend's baby girl and seeing her happiness. having friend's laughter fill the walls of our home. feeling so damn thankful that my college days brought some of the girls that i love the most. sleeping (yes, there was joy in that). opening happy mail. the awesome lemon bars that my mom made (i could have ate the entire pan. by myself. in like five minutes flat. seriously). enjoying have flowers in our kitchen. did i mention the lemon bars?

so we will see what the upcoming days will bring and how i will feel. i can only guess on that, and at this point, i am not going to because i am sure that i will be wrong one way or another.

i hope that you had a great start to your week, and i hope that it has some fun and magic ahead for you.

we can all use some of that.

onward we go (slowly because of the ankles).